A few months ago, my transplant nurse asked if I would join her on an organ donation education day for ITU and A&E staff at Torbay hospital. Of course I said yes, I didn’t quite know what I was letting myself in for and I’ve never done any public speaking before so I didn’t know how I’d do but if there’s a way I can help spread the word on organ donation; I’m there!
We arrived at the centre and first of all we listened to a donor family representative talk about his experience. Sadly, his wife died ten years ago and as a family, they decided to donate her organs. He spoke about how he and his wife had discussed organ donation prior to her death and how that made the decision a lot easier for them at the time but he also said the fact that she was signed up and on the register made it even easier to make that decision because her wishes were there in black and white. It was extremely emotional hearing about his experience and it really hit me hard, I didn’t prepare myself for it at all. He told us that he reached out to the recipients of his wife’s organs by writing to them a few months after her death. He wanted them to know that it was okay, that the fact his wife was able to donate her organs was the only positive thing to come out of the most devastating time. He told us that he found it comforting when they wrote back to him explaining how his wife’s incredible gift had changed their life. One letter was from the family of a new born baby who received part of his wife’s liver and who would have died without it. We got to listen to some of the letters being read out. I felt really guilty and really sad that I haven’t managed to complete the letter to my donor’s family yet. I have tried and tried, I’ve written many drafts but I just don’t feel like I have written a good enough letter to send yet. Its really frustrating and I really wish I could just get it done but I cannot begin to explain how difficult it is.
Listening to this incredibly brave man’s story really hit me. I think about my donor and their family every single day but because I don’t know anything about them it is hard to make a real connection to a person. I imagine who they were and what kind of life they had, who they have left behind but it’s all just stuff I have made up in my head. When this man was talking about his wife, everything became even more real. He is a real person who has been through the devastating process that my donor’s family went through just a few months ago, he lived it. He is still living it. He is left behind, along with their two young children. It hit me even harder knowing that his wife was the same age as my donor.
It was a huge reassurance hearing how comforted he is knowing the difference his wife has made by being an organ donor. He explained it as ‘the only positive to come from this hell’ and that is something I have always clung to since being placed on the transplant list. t The thought that organ donation can be the one good thing to come from grief and to hear it first hand from somebody who has lived it was extremely comforting. He said that he has made a memory box for their two children and he keeps the letters from the recipients in that box so when they’re older, they can read those letters and realise the incredible gift that their mum left to those people, she saved their lives.
After his amazingly brave story, my transplant nurse, Katie, gave a very informative talk on acute liver failure and chronic liver disease and the need for liver transplant in both cases. A young guy who was transplanted due to acute liver failure then spoke about his experience which was really incredible to hear. He went from feeling slightly unwell to having a liver transplant within a week, with not much awareness of what was going on! It was really interesting to hear about his experience. He didn’t have the same wait as me and he didn’t have time to get his head around the idea of needing a transplant and I find that really hard to imagine! I think its incredible how acute patients deal with the huge shock of what they’ve just been through. He has had a few complications since his transplant but is doing really well now which is always great to hear!
Needless to say, by the time it was my turn to talk I was extremely emotional. Like I said, I didn’t prepare myself for it at all. I’m usually absolutely fine when talking about my experience, I don’t think I have ever got upset when talking about it, so I guess it was due. Well, I basically sobbed the whole way through. It was really embarrassing but I somehow managed to get through the whole thing with the help of my sister holding my hand and passing me tissues! Thank god she was there!
It was a really insightful day and I’m so glad I got to go along. All the staff seemed really enlightened and they thanked us for sharing our stories. I hope we managed to make a difference and made them see, if they didn’t already realise, just how important organ donation is and the huge difference it makes to so many lives.
Today is also three years since my dear friend Stacie was placed on the waiting list for a heart and double lung transplant. This really breaks my heart. I think about the strain the year and 3 month wait had on me and then I think what it would have been like to wait three times longer like she has. I cant even fathom the thought. She is incredibly brave and so positive but nobody should have to deal with that. Nobody should have to wait that long to get their life back. We need to do more to encourage people to talk about the importance of organ donation, to talk about their wishes with their family and to sign up to the register!
If it’s something that you support, if it’s something you think is important, if it’s something you would agree to if you needed a transplant then PLEASE spread the word and talk to people about organ donation.
I’m off on holiday on Wednesday to Santorini, something I haven’t been able to do for the past two years. I’m SO excited and SO grateful. I wont be online whilst I’m away so will be back in a week 🙂
Thanks for reading this really badly written post, I wanted to write it but my head is still so full so it’s a bit all over the place. I hope it portrays just how special today was for me and how amazingly insightful it was hearing things from the other side of the transplant process x